So, I’ve shared abouttongue ties and how they affect eating and visual indicators of tongue and lip ties, but I only briefly touched on Cooper’s story. One thing that benefited me so much when I was in the research process, was to hear other’s unique stories about how their kids were effected by ties. It amazes me how different every kid is! And while I never talked about lip ties in the last post [because they don’t affect a child’s ability to eat solids] I am going to share this aspect of Cooper’s story first because it’s where our story starts.

9 days old, in the NICU

So, if you’ve been around awhile, you know Cooper was a preemie. He was born 6 weeks early but was quickly nursing like a champ. He did have a hiccup in the nursing experience, at about a month old that lasted a month, but it was unrelated to the ties and a story for another day. After we got past it, he was great again. He nursed quickly and efficiently, was gaining weight great, we were bottle free, and he was a super happy baby.

Around 6 months old things started changing. Cooper very slowly started becoming less interested in nursing. He wouldn’t quite finish like usual, he would get distracted and look around the room which he’d never done before, and he gradually started getting cranky and clingy. Over a period of about 2 months it got worse and worse.

One thing that’s important to understand in this story is that even though he was my second child, nursing a baby was completely new for me. Emery refused to nurse, which I didn’t know at the time was because she was also tongue and lip tied and unable to latch. All I knew about the nursing experience was what I saw and heard my friend’s kids doing.

When Emery was a baby, I had many friends who’s kids would suddenly stop nursing at 4-9 months old and only take a bottle. No matter what they did to encourage them to continue, their kids were done breast feeding. With this in the back of my mind, I just assumed it was normal and Cooper was doing the same thing. He was about 6 months old when it started and was becoming more aware of his surroundings. He would pop off in the middle of nursing to look around the room and look to see what noisy thing Emery was up to and act more interested in her than anything else. I always told myself his shortened nursing time and lack of draining my milk was simply a result of him being in a more active and alert stage of development. But it never completely sat right with me because while Cooper was seemingly weaning, unlike my friend’s kids, he refused to take a bottle, sippy cup, or eat solids.

A typical day for us turned into me holding or baby wearing Cooper almost constantly to prevent him from screaming and crying. What used to be my totally happy and content baby became a highly distressed and dysfunctional child. He became obsessed with me. He was always a mama’s boy but it escalated. He was sleeping less, he never wanted to be in a different room than me, he didn’t want anyone else to hold him. If I did happen to get out of the room without him noticing but peeked back in to see how he was and he caught me, he would scream bloody murder until I came and picked him up. It was rare, but occasionally he would even be perfectly happy, watching Emery doing something silly but the second his eyes met mine he would be in hysterics. It was such a heartbreaking and confusing time for me. My son was obsessed with me holding him but in an unhealthy way. Just looking at me from across the room caused him to go into insane fits. My heart hurt. I couldn’t figure out what was going on.

The only thing that seemed to give him temporary relief was nursing him, even though he only cared for about 5 minutes, it was 5 minutes of happiness. 5 minutes of quiet. At one point Andrew even commented on how often I was nursing him, “I feel like that’s your solution for everything, if he’s crying all you ever do is nurse him!” It didn’t make since to him at all but when you are around it all day and everything including your presence upsets your child, what else do you do? At the worst point, I was nursing him as often as every 15 minutes and each nursing session would last about 5 minutes.

cosleeping

He had also gone from just beginning to sleep through the night [or would at least go very long stretches before waking up] to waking more and more frequently to nurse over the course of the 2 months. We were cosleeping because I was barely functioning – he wanted to wake up so frequently and I was starting to realize that through out whatever it was that was going on, I had become his security blanket. I knew something was wrong at this point but I felt like there were no obvious signs. I had nothing substantial to tell a doctor – anything he was doing could be labeled as teething or normal baby behavior. Cosleeping helped him sleep longer and harder. He would wake less frequently and fall back asleep faster if he was next to me. My body couldn’t function without cosleeping to reduce the amount of sleep I had to loose – even with him in our bed I would typically get an average of 4 hours of broken sleep a night.

Waiting to get labs drawn

We were also in the middle of discovering Emery’s food intolerances and coping with the overwhelming changes that came with it. Our whole house was heavy and stressed. Looking back, I honestly know it was only the grace of God that kept me from dealing with depression. While it wasn’t as intense as our season in the NICU, it was a very dark time for our family.

One night after the kids were in bed, when Cooper was about 8 months old, I was on the computer researching food intolerances and gut health as usual when I stumbled across an article by Mommypotamus about tongue and lip ties. I have no idea why I clicked on it. My time was so precious at this point that I didn’t waste it reading about things that weren’t going to immediately help my family. Again, it was the grace of God that I clicked on it because it was a life changing moment for me.

the mommypotamus article that changed everything

I wish I could go back and see my face as I read. At first it was just interesting. Then it was fascinating. And then it started striking a chord. I was baffled and shocked. It took me everything I had not to run upstairs and wake Cooper up to have a peek. Well, not entirely true – tongue and lip ties actually completely grossed me out and I was having a really hard time with the pictures in the article. I was trembling with anxiety that I had maybe found the answer, wanting to lift his lip and check his tongue, but I was also sick to my stomach because I hated how ties looked – I was terrified about what I would see.

So instead, while shaking, I summarized the article for Andrew and hesitantly told him I thought Cooper could have ties. He rolled his eyes at me and thought I was just on some crazy hippie website again and buying into some hypochondriac nonsense. But the more I thought about it that night, the more lightbulbs were going off in my mind. I back tracked the sequence of events and realized that all of this emotional change in Cooper started when his front teeth started coming in. The progression in his emotional distress and the rate of his nursing plummeting were perfectly in line with the pace his teeth were slowly coming in. After pouring over articles that night, I finally realized that the further his teeth stuck out as they came in, the further it pushed his lips away from my nipple. It wouldn’t be a big deal in a child without a lip tie because their lip could stretch up to accommodate the change, but for a child with a restricted lip, he could no longer get a proper suction.

This is the best photo I have of his gap

The next morning I lifted his lip as fast as possible, so I wouldn’t have to see it for long, and I freaked out. So much so that I lifted it up again and couldn’t stop staring. I called Andrew to tell him there was absolutely no doubt Cooper had an upper lip tie – the frenumlum was so thick and actually started in between his two front teeth, solving the mystery of why his massive tooth gap wasn’t closing. The tie almost went to the tip of his upper lip, it was insane. I wish I had taken a picture!

I immediately started paying more attention to what he was doing when he tried to nurse – I started realizing that all along, his changed behaviors were actually various symptoms of a lip tie. He had started leaking milk while nursing at the beginning of this ordeal – my shirt and bra would always be wet when he was done. I thought it was strange but didn’t give it much thought until now. He had also started to sound like he was congested while he nursed, which, once I started paying attention, I realized was actually a sound coming out of his mouth, not his nose. He couldn’t get a suction anymore but he was constantly trying – his attempts to latch the whole time during nursing sounded like congestion because he was sucking air in to try to get the suction, while having milk in his mouth. It made an identical sound to someone trying to breathe through their nose while stuffed up. Also, his looking around the room in the middle of nursing was actually due to his lack of ability to latch. As I started observing him intently, I realized he was having to work so hard to stay attached and get milk that it was so much easier to take a break and look at Emery than it was to continue to put in the effort to get milk. How had I not realized how hard he was trying??

As soon as I started seeing all the signs for what they were, my heart broke into a million pieces for him. Of course he’s an insane, hysterical mess – the kid is STARVING! I knew he was eating less but up until now I thought it was by choice. I couldn’t understand why he wouldn’t finish a meal but I thought surely he knows what his body needs. A kid wouldn’t ignore signs of hunger, so I trusted him in my confusion. He’d always been an excellent nurser, why would I even consider he suddenly can’t do it? The thought had never crossed my mind. But to realize that he was actually now incapable of eating a complete meal was such an emotional revelation. Of course he cries like a mad man and has a love/hate relationship with me – I was a source of comfort for him but I was also a mega source of frustration as he worked so hard to get the milk out with little success. The dude was basically hangry for 2 months, I don’t blame him at all. I can’t imagine having to put all your strength into getting your food when you likely don’t have much energy from lack of nutrition. I deal with blood sugar issues and can somewhat relate to how awful he must have felt. I can’t handle being hangry for 20 minutes, I can’t imagine feeling that way for a solid 2 months.

Once I showed Andrew and explained all the connections to him, he was convinced as well. We got him revised 4 long weeks later, after figuring out our finances, and saw INSTANT improvement. His first time nursing he latched with a perfect suction; stayed latched until he drained me of milk – even though Emery was literally crawling on him while he was eating he didn’t pop off to see what she was doing once; and the best part of all, when he finished eating, he sat up with a huge smile on his face. The kid finally had a full belly.

Happy boy, post revision

I cried sweet, sweet tears of victory and joyfully thought this whole ordeal was behind us. I had to take fenugreek to build my supply back up and it was a process to get him to nurse less frequently as more milk came in to satisfy him for longer stretches. But for 2 solid weeks Cooper was a dream. I could cook without him screaming. I could leave the room to pee and not cause a huge fit. I could walk into a room, make eye contact with him, and have him SMILE at me. I can’t tell you what that did for my heart, to finally see my son have true joy when he saw me. His tooth gap also quickly closed up. A huge cloud was lifted from our house and I thought things could only get better. But 2 weeks after revision, even though he was still nursing like a champ, all the insanity came back.

Part 2 coming soon – Cooper’s Tongue Tie Story.

Have any of your children had lip ties? Did it effect them? Or does this make you question if you’re children have one? I’d love to hear your story and answer any questions you may have! Like I said in the previous tongue tie post, discovering and correcting these issues in Cooper were life changing for all of us – if I can help even just one mom find answers for what’s going on with her kids, I will be elated! Please don’t hesitate to ask me questions – if I don’t know the answer I can hopefully point you to a helpful resource!

I’d love to read part two! My two year old has an upper lip tie that we chose not to have revised. I didn’t even realise until she was after 1. She also has multiple food allergies. She ended up feeding until after 2 but I experienced a lot of nursing aversion.
My 1 month old had a lip tie and a bit of a tongue tie too. Am going to go to the osteopath and also to a tie clinic as he is having symptoms. Thankyou for sharing your stories. X

I definitely need to get that done! Blogging’s been on the back burner the past few months but I’m hoping to crank out a few posts in the next 2 weeks and this will be one of them! I hope you get the help you need at your appt!

Did cutting the tie work long term? Just curious because you said after 2 weeks all the insanity came back. I’m desperately searching for answers. my 6 month old has been acting the same. We finally confirmed she has tongue and lip tie and have an appointment with ENT coming up.

yes and no! the insanity that came back was due to his tongue tie – we initially only revised his lip tie. Once we revised his tongue as well, he started swallowing food and was finally getting the nutrients he needed. However, we quickly realized the screaming was also due to his body being out of line because of his tie. The tension he had in his body due to his tie were causing discs to come out of line in his neck and lower back. Once we started regular appointments for CST he went back to his normal happy self

Hi Amber…thank you for your story…I felt frustrated not knowing why my son was not eating like he was suppose to..he’s 3 1/2 and we just got him diagnosed with tongue tie. I have his revision in two weeks but I’m super nervous. Please let me know how Cooper’s post recovery went and what helped him to deal with soreness and pain. I greatly appreciate you writing on this subject, we have a lot of learning to do.

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Welcome to Real Food with Kids!

My name is Amber & I'm an Instagramer branching into the blogging world! Why do I cook with my kids? Our culture has become dependent on processed food because no one knows how to cook. No one knows how to cook because no one's teaching the children.
I believe vibrant health is found in a diet based on traditional food so I'm working in my house daily to break the cycle of generations that are clueless in the kitchen!